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Cleft Lip and Palate and Various other things

Tangerine

By Tangerine,
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Tangerine

Tangerine

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I had a little guy on 10/8 at 36w4d.  He was born (unexpectedly) with a bilateral cleft lip and palate and syndactyly.  I found a sacral dimple, which was examined via ultrasound, but they didn't see anything amiss.  It did however reveal some swelling in his kidneys, which will be imaged tonight.  We have very little information so far.  He's little and has those more minor challenges that come along with being a little early, which compound some of the other things.  The hospitals readily available to us are in Chicago.  Lurie, Advocate, UIC, U of C, etc.  Though we are willing to go wherever we need to to get him the best care we can.  I don't know that I have a specific question other than any advice you may have if you've navigated this.  He has had a microarray, which we will wait for for a little bit.  I am aware of all the google results in terms of syndromes that match and don't match his particular birth defects. Since I don't have that information yet to determine conclusively if he has any of those, I suppose I'm most interested in navigating the cleft palate issues.  He is on a feeding tube.  He can effectively use a bottle, but unfortunately the compression in his mouth is causing some bleeding.  So for now we are back to only using the tube.

 

Also, his name is Crispin.  He's super cool and I like him.

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wapiti

wapiti

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My kiddo had swollen kidneys detected prenatally, unpleasant tests and was tracked for months before having the surgery to fix a UPJ obstruction at 8 months old.   That was with the then-chief of urology at Chicago Children's, back before Lurie was added to the name.  At the same surgery, an ENT fixed his full tongue tie - I recently noticed in some genetic results that he has a gene mutation for tongue tie/cleft palate though I'm not aware of any actual cleft issues (he did just have sinus surgery, but that's another story... something about teeth going into the sinuses was noted).  He also had a tethered spinal cord, surgically-released when he was 5 y.o. - a sacral dimple can sometimes be a marker for tethered cord (diagnosed only by MRI, so if your baby gets MRI for anything, I'd ask for the spinal cord to be imaged just so you don't have to think about it down the road if you run into other symptoms).

 

Congratulations!

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bethben

bethben

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Are they doing chromosome testing?  I hate to suggest that, but I found out later that little kidney abnormalities that are not a big deal can happen a lot with these special kids.  My son for example was being watched carefully for kidney issues in vitro that didn't turn into anything later on.  My son had a surprise chromosome disorder that is pretty rare.  I would have never found it on a google search.  I really really hate to suggest you do chromosome testing, but it may tell you something about your new little guy who you love.

 

eta:  I guess they're calling chromosome testing a microarray now?  I see that you are getting that already.  

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hornblower

hornblower

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Congratulations! Welcome to our little hive, Crispin! 

 

no advice for you beyond that you should ask everyone there : 'if this was your baby, who would you want to look at him? Where would you take him?' Ask nurses, ask the occupational therapists, ask the neonatologist.

 

OTs and lactation consultants can assist you or refer you to others who know and will know who does the best assessments, interim tools such as a Haberman feeder, and cleft repairs. 

 

Start a binder, keep notes cause there will be too much to remember. 

Try to take care of yourself. I hope you have a big support team. 

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Sandwalker

Sandwalker

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Hi and congratulations on your new baby! I'm sorry that you have these added worries.

 

There are a couple of bottles that may work for your little one--if not yet since he was born early, maybe a bit later.

 

JohnsonCleft Lip/Palate Nurser

by Mead Johnson

23b21613f3825f5bfe545e922ea2374c.jpg

 

The Cleft Lip/Palate Nurser by Mead Johnson is a low-cost, soft, squeezable bottle.

 

We suggest that you replace the long yellow nipple that comes with the bottle. Use any shorter, softer nipple.

 

Before using the bottle for the first time, put some water in it and practice squeezing the liquid out of the nipple. This will help you get a feel for how firmly you need to squeeze.

When you squeeze the bottle, the liquid should flow easily but not too fast.

As your baby begins to suck, squeeze the bottle with a firm, steady pressure to the count of "squ-e-e-ze-2, 3." Relax your squeeze on the 2, 3 count. This pauses the flow of milk.

You should only squeeze when your baby is sucking. Watch your baby closely and listen for swallowing sounds.

If your baby pauses to breathe, you should pause also. If your baby is getting milk out of the bottle, you should see air bubbles in the milk.

If you forget to stop squeezing the bottle when your baby pauses, your baby may cough and sputter. Just take the nipple out of the baby's mouth for a moment and let them settle. Then continue feeding."

____________________

Another kind that I have used in the NICU with babies, I like this one

: Dr. Brown’s Specialty Feeding System with one-way valve

7ea83bc77ad0ce2e1da8d31a4e3af917.jpg

 

You can buy Dr. Brown’s Specialty Feeding System with one-way valve through Amazon. The Dr. Brown’s bottles sold in stores do not have the one-way valve.

 

Dr. Brown’s Specialty Feeding System uses a bottle with a one-way valve at the base of the nipple to keep the nipple full of milk. It does not require suction.

 

When the baby bites or compresses the nipple, milk flows into their mouth and not back into the bottle.

The one-way valve ensures that there is always milk in the nipple.

The baby controls the rate of the feeding.

-----------------------

There are others on this site as well. http://www.seattlechildrens.org/clinics-programs/craniofacial/patient-family-resources/cleft-feeding-instructions/

A knowledgeable nurse or lactation consultant may have the best recommendation for your baby. (((Hugs))

Edited by Sandwalker
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Noreen Claire

Noreen Claire

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Congratulations to you and welcome, Crispin!

 

DS21 has syndactyly toes. DS8 had swelling in the kidneys prior to birth. DSs 8, 5, and 3 all have sacral dimples. I have absolutely no advice but to say that nothing has ever come of any of these things and all 4 boys have no ill effects.

 

I will keep you both in my prayers.

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Stuart

Stuart

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Welcome to the world Crispin. Take care of yourself momma. I know it's hard. It very important. I'm a NICU nurse and The Dr Brown specialty feeder is what we use at work for our patients with clefts. It is great so much easier than the Haberman. Waiting on test results is hard. Hold your little man skin to skin as much as you can. Mommas have healing touch.

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J-rap

J-rap

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Congratulations!

 

No real advice, but try not to jump to any conclusions.  One of my dd's had a few characteristics that seemed somewhat unusual at first.  She was really tiny at birth, much smaller than my others even at full term.  She had tiny ears, and a sacral dimple.  She didn't seem to put on weight and slowly fell off the chart when she got to 3 months. She had a large pink birthmark across her forehead.  Syndactyly toes actually run in the family.  Many people have them in my dh's family, although this particular dd doesn't.  (My ds does!)  Her first teeth didn't come till much later than my other children, and she was very weak-limbed for many years.  At one year she was just 14 pounds.

 

They thought she was born without an ovary, though later they realized they were wrong.  (!)

 

Anyway, fast forward to now, and she is a healthy 22-year-old.  She is 5'5", and though petite, she is active and participates in sports.  They feel her sacral dimple was maybe the early development of spina bifida that never happened.  Her ears grew big enough to pierce.  The only real permanent condition is that the bones within her ears move very little, like an elderly person's.  She has a hearing loss and wears hearing aids, but that has never bothered her at all.  Even her birthmark faded away as her natural olive skin tone settled.

 

 

 

 

 

 

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Tangerine

Tangerine

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Thank you everyone for your input. He had chromosomal testing sent out about 48 hours after birth. The geneticist seemed to think he has separate unrelated anomalies that were not part of a syndrome, but we await the results of the microarray. His kidney ultrasound was mostly unremarkable. Some dilation that the neo thinks is developmental related. He will repeat that ultrasound as well as his echo between 4 and 6 months. They are waiting for more myelinization prior to MRI.

 

He had to go back to full time on the tube as the Dr. Brown's cleft bottle was making his mouth bleed. We are going to try the Haberman part time to see if that will work and not irritate his mouth. We have had SLPs coming to assist with feeding from the beginning.

 

I appreciate the collective experience of the Hive.

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